Benign Myoclonus Of Infancy 246

Episode Transcript
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Speaker 1 (00:01):
The past 72 hours have been an emotional roller
coaster for the Liberty family.
A routine day with Paisleyspirals into multiple calls and
messages with medicalprofessionals, resulting in a
weekend spent at the children'shospital.
We get through it all withfaith and positivity.
That and so much more.

(00:23):
On today's episode of Share theStruggle podcast, let me tell
you something.
Everybody struggles.
The difference is some peoplechoose to go through it and some
choose to grow through it.
The choice is completely yours.
Which one you choose will havea very profound effect on the

(00:43):
way you live.

Speaker 2 (00:43):
your life will have a very profound effect on the way
you live your life.
If you find strength in thestruggle, then this podcast is
for you.
If you have a relationship thatis comfortable with
uncomfortable conversationsuncomfortable conversations

(01:06):
challenge you, humble you andthey build you.

Speaker 1 (01:08):
When you sprinkle a little time and distance on it,
it all makes sense.
Most disagreements they stemfrom our own insecurities.

Speaker 2 (01:15):
You are right where you need to be Back on time.
We can back once the whole daygone, but we're behind, ooh, ooh
ooh, ooh, what it do, what ithot Did-a-dee-do.

Speaker 1 (01:38):
Good Lord, almighty, am I so excited to be back with
you?
Oh, it's true, it's damn true.
And right now it is dumpingsnow outside.
Can you see that from whereyou're at?
Mm-hmm.

Speaker 3 (01:54):
Wow.

Speaker 1 (01:54):
Yeah, those are big flakes.
Big flakes right there, notreferring to dandruff or that's
gross or flighty people.
We got big flakes right now.
We are thankfully recordingtoday From the comfort of our
own home, which feels even morecomfortable After the past few
days we've had Thank God and weare just Watching Mother Nature.

Speaker 3 (02:22):
From the seat of our couch.

Speaker 1 (02:24):
Yeah, the old doodling couches have come in
handy for today's episode of thepodcast.
Y'all might be a little bitsurprised by the intro to
today's show, the B-roll.
If you would can imagine howsurprised we were to live
through what we just wentthrough this weekend, or shall

(02:49):
we say grow through what we justhad to grow through.
What a what a time, what adifficult time for us.
As we mentioned, it's been anincredibly challenging 72 hours
or so.
It's really been a rollercoaster, but you can tell by the
sound of our voice that we'refeeling rather optimistic at
this moment.
But without jumping too farahead, I think it's important

(03:14):
that we just kind of set thescene and paint the picture and
pave the road and tell the storythat needs to be told.
What do you say?

Speaker 3 (03:21):
Yeah, let's share it.

Speaker 1 (03:24):
So Friday we're going to the the curtain back to
friday and uh, it was a.
It was a routine day on friday.
The only thing that wasn'troutine about it is that
paisley's routine was a littlebit, a little bit different, and
that's one of the reasons why,um, I kind of read the room a
little differently.
So on Friday all of us kind ofgot up to do our thing and when

(03:48):
you left to go to work I hadloaded Paisley up in my dad's
truck and brought my mom to gether hair done.
So we dropped Mima off at AnneMarie's to get her hair done and
me and the baby just kind ofwent on about our day.
So typically on a Friday shewould get up in the morning, you
get ready for work we'd do barnchores, stuff like that, and

(04:14):
then you know she would have abottle and kind of ease into the
day and then maybe go getcoffee with me, ma, and then,
because it's Friday, she wouldgo to me Ma's house and spend
most of the morning andafternoon there and I would go
up and check on her from time totime, but it's one of the days
where I can work from home.
So it's kind of Meemaw's daywith Paisley.
But Meemaw had an appointment.
So this morning her routine wasa little bit different.

(04:34):
So she got up and she had herbreakfast in the car seat on the
way to drop Meemaw off.
And then when we got home,because her morning was a little
bit different, I decided let'sjust get you playing and doing
your doing your thing so thatyou can have a nap before a
Meemaw gets done her appointment.

(04:56):
I was just trying to time theschedule and so we went right
into right into playing so I puther in her little, her little
bounce zone.
We call it.
I think that, lady, we pickedup one of those I don't know
what the technical term for thisthing is.
It's like a jumper with asurrounded by activities and

(05:16):
stuff that one lady gave us oneof those and she mentioned it
like the circle of neglect orsomething I don't know if she
called it.

Speaker 3 (05:23):
Circle.
Of doom it wasn't doom.

Speaker 1 (05:31):
You added that yourself.
It was the.
Don't call it neglect.
That sounds terrible.
Oh, that's what they call it.
Because they don't have to, youcould drop the kid off and let
them do their own thing and youcan go about like your own
business.
That's what this lady had kindof phrased it as.
But anyways, we got thesethings all over the house.
We've got a couple here, we gotsome of me, ma's, she loves
them, basically gets in andbounces around, does her thing,
loves her, loves her time andthose, and that's one of her

(05:52):
favorite um little, you know,just fun zones yeah so I set her
up in that she's having a blast.
I'm trying to get some thingsset up, I'm getting her her nap
area set up, getting all of hertoys out, and she's jamming hard
and fast and I'm, you know,sitting in front of her, kind of
playing with her, and I noticedthat she started to drop her
head and um, when she did.

(06:13):
Originally my first instinctswere because she loves to put
everything in her mouth.
At this stage, the like um playarea in front of her had some
blinking lights and music andstuff and I thought maybe she
was going towards her to try totry to eat it, try to lick it,
try to claim it as her own rightmarker territory exactly so.

(06:33):
When this um happens the firsttime, I was like oh, she must be
trying to get to that.
And it happened a second time,like real back to back, and I
thought she was trying to get tolike the blinking lights.
And it happened a few moretimes and, um, it seemed kind of
odd to me but I chalked it upas this kid's really tired and

(06:55):
our, our child has the worstcase of fomo, which, for anybody
that doesn't know what that is,it is the fear of missing out
this kid has to be involved inevery single thing.
She fights sleep to the pointsof exhaustion because she thinks
that she's missing something Ifthere's anything remotely cool
going on, she does not want tosleep, and what she defines?

Speaker 3 (07:15):
is it doesn't even have to be fun.

Speaker 1 (07:18):
Yeah, her definition of remotely cool could be two
people talking, you know what Imean.
It could be two people talking,you know what I mean.
It could be lights in a store,it could be a program on TV.
It does whatever she, if thedogs are moving around quickly,
like a little more quicker thanexpected, that's fun.
I got to keep an eye on this.

Speaker 3 (07:32):
She'll be laying down like in that position, like
half eyes closed.
The dog will walk by and she,like full undertaker, sits up
straight what the hell's goingon here.
Looking around, like what thehell's going on here?

Speaker 1 (07:44):
looking around like I gotta do something.
I gotta be a part of this,don't leave me out.
So this kid, when she's havinga blast, she definitely doesn't
want to shut it down.
She's uh, she's all gas, nobrakes.
She doesn't want to take a takeand shut it down.
So, um, I'm like, okay, you're,you're tired, but it was kind
of a flag of like.
That seemed weird.
I've never seen you do thatbefore.
She dropped her head about fiveor six times in a row.
But I picked her up andimmediately she went to rubbing

(08:06):
her eyes.
Her eyes were red and shelooked like she was really tired
.
So I set her up for a nap, gother a bottle and very quickly
after you know her fighting withme she went to sleep and, um,
we went on about our day and ourroutine and everything was fine
and, um, it never came backagain until later in the

(08:27):
afternoon, I think.

Speaker 3 (08:27):
Actually you got home a little early yeah, I was
feeling like shit, so you gothome a little early and we were
all at me ma's house and then uhyou kind of um witnessed it
again, if you want to explainthat yeah, so it was like 2, 2,
30, 3 o'clock I think it was thetime frame, um, and she was
sitting on the couch and I hadasked, like when her last nap

(08:48):
was and if she had had a coupleof big naps or if she had had a
big nap in general.
And she had not.
She had had a couple of likesmall 20 minute naps, 30 minute
naps and I think 145.
Me ma had said and that wasreally it which normally for her
, since you've been back, wouldbe like an at least one hour nap

(09:09):
, if not more than an hour.
Um, and so at that point, likeI'm sitting there like talking
to her and I see her do thathead drop again, and when we're
talking about a head drop, it'slike very similar to like when
we're sitting on the couch oryou know you're dozing off and
your head kind of just likedrops down, like like an
uncontrollable yeah like I hadkind of painted this picture

(09:32):
over the weekend.

Speaker 1 (09:33):
I was talking with finnegan and um, I said you know
what, if you put me outside,maybe eight beers deep, on a
sunny day, 9, 30 at night, I'mtrying to get through extra
innings on a yankees game and uh, fighting to keep my head up
and they're trying to take theremote away from me like that
scenario right like your, yourhead starts falling down when

(09:54):
you're kind of like scares youto being awake, that type of
that's what it kind of lookslike yeah.

Speaker 3 (10:01):
So, um, I had noticed her do it one time and I was
like, oh, what is that?
And then I had continuedwatching her because I was like
that's strange.
I never seen her do that before.
And she was like just playing,acting normal, like nothing had
even happened.
And I was like, oh, maybe she'stired.

(10:21):
And then, like seconds after,she had done it like
repetitively, at least four orfive more times right in a row
and I was like, wow, that'sreally strange.
I ended up picking her up andwas like holding her and I gave
her a bottle and she ended uplike falling asleep in my arms
for I think like 20 minutes orso 20, 30 minutes, yeah,

(10:43):
probably.
I think like 20 minutes or so20, 30 minutes, yeah, probably.
And then when she woke up, shehad been sitting on me and then
did it again another like fouror five times and I was like,
okay, this is not right.
Like this scares me.
I actually ended up taking avideo of it because I was like I
don't really know what this isLike.
I don't think that this issomeone who's just really tired

(11:04):
and just keeps dropping her head, because she's doing it in a
repetitive motion, as if to belike like a spasm or like a
Tourette kind of thing, like I'mtrying to like run through
neurological things as I workfor neurology, like what could
this be?
Um.
So I ended up actually umsending a video and a message

(11:28):
over to the pediatrician and Iwas like this doesn't seem
normal to me.
Mind you, it's like threeo'clock on a friday afternoon.
They don't want to hear fromanybody.

Speaker 1 (11:37):
let's just be honest I think we're fortunate enough
that one of them was at ourwedding.

Speaker 3 (11:43):
Yes, yeah, the RN, one of the people at the office.
Yeah, the triage RN.

Speaker 1 (11:47):
So Christine being there, I think things get
answered.
Oh for sure, without that theyprobably wouldn't be For sure
For sure.

Speaker 3 (11:54):
So we send it over and you know instantly Christine
gives me a call back and shestarts asking like 21 questions,
like is this normal?
Do you see this often?
And I was like no, this is thefirst time.
Dad had seen it this morningaround nine o'clock, and that
was the only other time that wehad witnessed it.
So she's asking me like a bunchof questions.
She's like all right, I'm goingto go to the doctor.
Your doctor's not here, but I'mgoing to go to the two

(12:15):
providers that are here.
And so in the meantime ofwaiting for Christine, I start
like Googling, which I neverrecommend.
I work in the healthcare fieldand I never recommend Googling.
But I need to get some answers.
I need to see what exactly thishead drop is going to point me

(12:36):
in some sort of direction.
So when I use Google, workingin the medical field, I'm not
looking for a diagnosis, I'mlooking for things that may
cause a head drop.
So I'm looking for diagnosesthat are coming forward that are
saying like, all right, it'sgoing to be A, b or C, and that
way I can look in some sort ofdirection.

(12:56):
So, to my surprise, reddit wasthere, coming in clutch, stating
that a lot of children atPaisley's age being six months
had parents had seen this headdrop thing before and they were
marking it as they noticed thesethings happening after the

(13:17):
children had their six-monthshots.
Well, she hasn't gone in for asix-month shot, so I like chalk
that up.
I was like nope, can't be thatCan't be affected by the
vaccines.
So what other options do I havehere?
And then other people startedmentioning infantile spasms.
So I'm like, okay, that checksout.

(13:38):
It's a head drop, a couple oftimes pretty repetitive, that
could be a spasm.
Fell into a rabbit hole there.
I copied and pasted that intoanother Google browser and
started looking into infantilespasms.
Well, if you don't know,infantile spasms actually breaks
down to epilepsy.

(13:59):
Boy did I fall into a rabbithole?
And I was like, oh fuck, herewe go, like this is scary.
Now Like, but of course I'm not.
I'm waiting for thepediatrician to come forward.
Call me, what have you?
So I'm still reading.
Lots of people say that theysend their kid the they outgrow
it.
Other people are saying thatthey put their kid through an

(14:20):
EEG and an MRI and just a listof different things.
Some people are saying don't doit, don't put your kid through
an EEG and an MRI and just alist of different things.
Some people are saying don't doit, don't put your kid through
an EEG and an MRI at that age.
It's terrifying.
Other parents are like, oh,just let it ride, it'll be fine,
the kid will outgrow it, whathave you?
So finally I get a call backfrom the pediatrician and at

(14:43):
this point it's, I think, likealmost four o'clock at this
point by the time we finally getan answer back.

Speaker 1 (14:50):
Yeah, it was easily after four.

Speaker 3 (14:52):
Yeah, so I'm like all right, like we're barking at
four o'clock and I'm like it'sfour o'clock on a Friday, like
I'm probably not going to hearanything.
Like if it was a concern, theywould call me like immediately.
Well, they called and one ofthe providers who had watched
the video, um, was like oh yeah,no, this is normal.
I see this all the time.
Um, this is actually um adevelopmental underdeveloped six

(15:19):
developmental issue.

Speaker 1 (15:21):
Yeah, basically traditional underdeveloped six
month old, not saying that she'snot developing at the right
pace, right, but just saying atsix months old you're still
developing muscles and you'restill trying to hold your head
up coordination and you got abig squash.
You have a hard time keeping itup.
Yeah, if you're more tired,it's going to be even harder to
keep it up.
Yeah, which was right in linewith what I felt in the morning

(15:44):
and that's kind of what I washanging my hat on until I saw it
again.
And then you kind of went downthis, this journey that we went
on and, um, my originalinstincts were like she's just
overtired and can't keep herdamn head up, which they agreed
with that.
So we're like, okay, well, sheneeds a nap and we're good here.

Speaker 3 (16:02):
Yep, and so we just we took it at that and didn't
really think much of it.
In the meantime I, like I saidI had sent the video over to the
pediatrician, but I had alsosent the video over to one of
the neurologists that I work forand honestly, I didn't know

(16:25):
like to me it looked like itcould possibly be neurological a
concern.
So it was like all right, letme have the neurologist look at
it.
She deals with adults, so shedidn't really feel comfortable
putting any sort of like exactconcern or diagnosis on it.
She's like let me send thisover to one of the neurologists

(16:46):
pediatric neurologist that alsoworks for our company and so she
had done that, and while we'rewaiting for him to respond,
she's basically like yeah, Idon't know, like I don't want to
scare you or get you all workedup, don't you know who knows?
Let's see what he has to say.

(17:07):
Um, and so we just went aboutour business.
I went to walmart, got stufffor dinner, like, took her with
me, like, didn't see it again.
She was taking a nap and um,and we were, we were good we had
ended up, um, going for like anhour drive to make sure that
she got like a big nap inbecause she fell asleep in the
car.

Speaker 1 (17:26):
Well, that hour nap happened after you got a phone
call.
You got a phone call while youwere in Walmart.

Speaker 3 (17:34):
Oh, yes, yes, you're correct.
So that's right.
My bad, these 72 hours justkind of mesh together.
Yeah, so I did get a phone callwhile I was at Walmart and it
was the neurologist, and shebasically said that the
pediatric neurologist was veryconcerned and was looking at

(17:55):
this being infantile seat spasms, also known as epilepsy, and
wanted us to be evaluatedimmediately like wanted us to
drive to Portland, be like seenat the ER, because that provider
who reviewed the video, thepediatric neurologist, was
actually on call at the PortlandHospital at Barbara Bush.

Speaker 1 (18:16):
Portland Hospital is like our biggest hospital in the
state.

Speaker 3 (18:19):
I think right Yep.

Speaker 1 (18:20):
And the children's hospital in there is known as
the Barbara Bush.

Speaker 3 (18:23):
Yep, it's the only children's hospital that we
actually have here.
Yeah, it's state of the art,like it's the big, yeah, they
have doctors that fly in fromall out, like out of the states,
like to work here like it's so.

Speaker 1 (18:37):
It's a Friday night and I was outside doing the barn
chores and you came home and Icould tell when you were coming
across the field that you wereshaking up and yeah and I kind
of started freaking out likewhat the hell are we talking
about here?
Why would we?
I thought we've already coveredwhat this is you?
Know, and uh.
Now we have this specialistsaying like you need to be seen
now and they're basically sayingyou know you should be here

(18:59):
right now being admitted um atBarbara and then, as soon as we
have the opportunity to put anEEG on, we're going to go
through with this testingBecause they were concerned that
these infantile spasms could berather damaging and the sooner
you catch it, the better offyou're going to be.

Speaker 3 (19:20):
Yeah, they said that.
If that's the case, then theyactually like to start the
children on the treatment planwithin like 48 hours of.

Speaker 1 (19:29):
Yeah, they want to be on this as soon as possible.
Your likelihood of um likerecovery or um you know,
increases your chances of umovercoming this stuff.
The sooner that you can you canget to it.
So we now have twopediatricians telling us she's
fine, don't worry about it.
We now have two neurologistssaying you should be at the

(19:54):
children's hospital.
And then you have you, me andmy mother trying to figure out
what the hell's going on.
At this point, paisley justfalls asleep for a nap.
And I said this kid needs a nap.
just falls asleep for a nap andI said this kid needs a nap
let's go for a drive so we drovearound we drove around all of
kenny, bunk and arundel andlyman and dayton drove around

(20:14):
for an hour just let her sleepyeah, and she got a good nap and
, as we talked it all out, um, Ithink we were firm believers
that we don't want to holdanything back when it comes to
taking care of our child, thatwe're not going to keep her away
from something, but we're goingto go with our own instincts
and intuition at the moment andsay that we know our child, her

(20:37):
routine was different, she wastired, she hasn't napped, she
clearly needed a nap and we'regoing to see how she reacts and,
um, you know, we're going tokind of see how things go and at
least give her the benefit ofthe doubt of the night and see,
you know, for ourselves here,and to not really overanalyze
every single thing that happens,but to kind of take it all in

(21:00):
and you know we talked to andback and forth on our decisions
for the whole hour.
We drove her out.
Yeah.
I think that I just truly feltin that, in that time that you
know we need to see more beforewe can make this decision and,
uh, she took a nap, came homeand she was fine the rest of the

(21:22):
night.

Speaker 3 (21:22):
Yeah, she was eating, she was playing.
She took a nap, came home andshe was fine the rest of the
night.
Yeah, she was eating, she wasplaying, screaming at us Just
playing.

Speaker 1 (21:27):
We never saw her again.

Speaker 3 (21:27):
Talking Not screaming like she was mad, but talking.
Yeah, we didn't see her againuntil we went to go put her to
bed and she did one head drop,but it was checking out.

Speaker 1 (21:39):
It was right around the time that she she's tired,
she immediately goes to rubbingher eyes.
So that almost confirmed to us.
Okay, when she's tired, thishappens and this we're going to
be fine here.
So we all went to sleep and inthe morning, um, I think I was
changing her and doing stuff andyou were outside doing chores
and you got another phone callyeah, the neurologist um had
called.

Speaker 3 (22:00):
Um called me and said , hey, not to scare you or
anything.
But the pediatricianneurologist that was on call
actually called me this morningand was really concerned that
you guys were not there atPortland Hospital and I said,

(22:20):
well, to be honest with you, wehaven't seen it since.
Well, to be honest with you, wehaven't seen it since and we
don't really know, like, whatthe right avenue is.
Like we don't want to, we don'twant to run every single time
something looks different, butwe want to also do what's right
for her.
And she was like I canunderstand that 100% she's like.

(22:42):
But I can tell you right nowthere are two neurologists that
are looking at these videos thatare concerned enough to call me
on a Saturday to ask me whyyour friends are not here and
they're on call.
They're not going to make morework for themselves if they
think it's a Saturday morning.

Speaker 1 (22:58):
It's a Saturday morning.

Speaker 3 (22:59):
Yeah, they're not going to make any more work for
themselves if they don't have tosee a patient.
Like they were genuinelyconcerned about what they had
seen and wanted us thereimmediately.
And so I had come inside andjust basically like said to you
like hey, listen, like I stilldon't know what to do, I don't
want to make any decisions on myown, but the phone call that I

(23:22):
just got was from theneurologist and the pediatric
neurologist and they want to seeher now.
They want her there at theemergency room and the EEG techs
are only there until noon andif we can get there, they will
hold them there and have herhooked up.
That's how concerned they are.

Speaker 1 (23:43):
For people to understand too.
This EEG test basically there'sa bunch of little electrical,
like little wires, that getglued to your head.
I mean, I don't know 15 or 20of them, basically right.

Speaker 3 (23:58):
On each side.

Speaker 1 (24:00):
So it's all over the place.
There's a big trail of wiresthat get plugged into a box that
you know gets attached to you.
Um, that gets kind of allwrapped up on your head and it's
a 24 hour minimum on this testbecause they want to see your
brain activity in the daytime,processing things, how you, how
your brain works when you'retaking naps, when you're

(24:20):
sleeping at night, when you'reeating, when you're playing and
then when these events happen.
So so they do the test for 24hours with a child.
It all has to happen there witha camera on the child, so
they're being videoed at thesame time and it's a 24-hour
process.
So when you were reading theday before all these things,
people are saying like don't dothis, don't do this to your kid.

(24:42):
So in the back of our mindwe're thinking about this too.
But when we now have, you know,a neurologist calling on a
Saturday saying like we'reexpecting you to be here this is
serious.
We need to see what's going on.
At that point it's out of ourhands.
We have to go do this and like,like you said, you know we want
to do what's right decision is.
So, um, we headed to uh, to thehospital.

Speaker 3 (25:06):
Yeah yeah.
We headed to the Portland umhospital.
Um walked in through the ER, um, as we were directed, um did a
couple of name drops for theneurologist because they were
expecting us.
Um, and the staff downstairswas, I'll tell you they were
really quick.
They were really quick when itcame to me walking in, because
you were parking the car and Iwas walking in with a newborn or

(25:28):
a baby, uh with uh in a carrierby the time I had the car
parked and came inside, you guyswere two minutes away from
being done with your wholecheck-in and we were going to a
room yeah, which is?
I mean, I don't know about y'allbut, or where your ER is.
But that's's pretty quick,that's pretty stat.

Speaker 1 (25:46):
Put it this way, my dad showed up at the ER bleeding
and having a heart attackdropped off.
You know, literally had, youknow, the ambulance, call it in
and you guys waited in the lobbyfor hours.

Speaker 3 (26:00):
Yeah, for five hours and then we got a room.
Yeah, so we're talking abouthaving a room in you know five
minutes and they also have likean adult wing and so like, when

(26:24):
I like name dropped theneurologist who's on call, like,
they immediately pulledPaisley's record and was
checking the notes and he hadalready put notes in there at 9
am and we were not even there.
We got there at like 11.
He already had notes in thereand was already messaging the
pediatrician telling them thatthey were absolutely wrong.
This is a concern.

(26:44):
This is not just your standardum six month old who can't hold
her head up like they.
He was on it.
He was that concerned.
Um, so, yeah, we get into theroom and this doctor walks in
who's what, like eight feet tall, like, oh yeah, that guy was
huge, oh my god.
I mean, he's not eight feet, buthe was at least seven he's at
least seven feet at least sevenfeet tall.

(27:04):
He had to duck to get in thedoor and of course he's dealing
with children, so howintimidating is that fucking
jack-o'-lantern stock well,paisley's not intimidated by big
people no, but uh, yeah, hewalks in like, checks out, like
um they all loved her, everybodyin that whole process everybody
yeah.
so they came in um and was yeah,you know, I'd really like to,

(27:25):
I'd like to admit her.
And here's what's going tohappen.
Like she's going to getadmitted and they'll do an EEG
on Monday.
And I looked him dead in hisface and I said absolutely not,
it's not going to happen.
I said I've already beentalking to Dr Heiss and he is
expecting her.
He said specifically that hewas holding the team.
He wanted us here before noon.
I'm not holding off.

(27:46):
We are not going to sit hereuntil Monday.
It's not going to happen.
That's going to put her out ofher element.
That is going.
She's going to getuncomfortable.
We're not doing it.
If you're going to hold herhere until Monday to do that,
we're leaving.
We're not doing this.
And so, like he had left andlike, oh no, he had, he had left

(28:07):
and then came back with thesupervisor to tell us that they
were admitting she got twotwo-thirds of a word out of her
mouth and got bitch slapped backshe said monday space.
Yeah, she said monday and I saidyou better take your fucking
monday ass right around left theroom and we're like, okay, well
, there's that, yeah no, I was.
I was standing 10 toes down onbusiness.
I am not going to let mydaughter sit here until Monday,
when I know for a fact that I amtalking to two neurologists on

(28:30):
the back end that they don'tactually know about that.
That neurologist is waiting forus and so I was not taking that
as an answer.
So that neurologist, dr Heiss,actually came down, spoke with
us, did an exam and I showed himthe video, showed everybody the
video, and he had run downinfantile spasms and what to

(28:55):
expect.
You know what the outcome couldbe.
The cause of it Like he wentover everything.

Speaker 1 (29:04):
This is when things begin to become extremely scary
for us.

Speaker 3 (29:07):
Yeah, extremely serious.

Speaker 1 (29:09):
Because all signs based off of what our
conversation now point to theseinfertile spasms.
And this begins the long roadof developmental issues where
you don't know what they'regoing to be.
This could be learningdisabilities, it could be motor
skills disabilities, but it'sgoing to have some kind of

(29:29):
effect.
And his thing is saying, likethe best case opportunity or
best case scenario for this isfinding this as quickly as
possible.
And he said this is an extremecase for me because you guys are
here within 24 hours of thefirst signs of these seizures
this doesn't happen.

Speaker 3 (29:48):
Yeah, he says I usually see patients at, you
know, three months in and youknow the the pediatrician will
be like, oh, what was that?
Like they're doing some sort ofepisode.
And the parents will be like,oh yeah, they've been doing that
, like didn't think anything ofit.
And then they have to go startthe process and basically
backtrack and like try to getthe treatment necessary to
basically fix the last threemonths.

Speaker 1 (30:09):
He tells us that you know we would administer an EEG
24-hour test, possibly 48-hourtest.

Speaker 3 (30:18):
If we couldn't get the episodes, if we couldn't get
the episodes to happen.

Speaker 1 (30:21):
He needs enough data.
Couldn't get the episodes tohappen.
He needs enough data upon thoseresults.
If they determine that this iswhat's happening, then, um, they
would schedule an mri where shewould have to be put under
anesthesia yeah, because shecan't sit still that long to
determine, you know, what areasof the brain are affected, to
then decide on the best courseof action for medicine, most

(30:44):
likely a steroid.
And he says we want thesethings all administered, this
medicine to be administeredwithin three days of the
diagnosis.
Like we want to be on this.
That is our best case chance oftrying to defeat this or to
slow this, but even so, thesuccess rate in medicine is 50%

(31:05):
to 60%.

Speaker 3 (31:06):
Yeah, it wasn't very good odds.

Speaker 1 (31:09):
The best case scenario was a 60% chance of
this making a difference.
And he said you know, I thinkwe could be looking more towards
that higher percent chancebased off of how soon you guys
have found this, yeah, this,yeah.
But um, to start hearing the,you know the words of epilepsy

(31:30):
and developmental issues anddisabilities and um, like,
everything just starts to, juststarts to punch you in the face
at that point yeah and so, uh,as he's going over all these
things, he says you know, I wantto admit her and we'll start
the process.

Speaker 3 (31:49):
And I called him on it and I said, well, they just
said Monday.
And he was like, absolutely not.
He's like I have an EEG techwith her name on that list right
now.
There's a possibility that theycan hook her up today, if not
tomorrow morning by 8 am.
She has a bed upstairs waitingfor her.
He's like I have him holding it.

(32:10):
And again, if we just circleback to the fact of like we were
in the emergency room andwithin five minutes we're in an
ER room, and now it's been atleast a couple of hours of the
providers coming in and doingtheir, doing their evaluations
and forming a game plan, and nowwe're right upstairs and have a

(32:31):
bed.

Speaker 1 (32:32):
Like this is very quick turnaround, one of the
most difficult areas probably,you know, in the state to get a
bed, yeah right yeah, becauseit's.

Speaker 3 (32:41):
It's the only children's hospital in our state
and there's never a bed open.
And if there's a bed open likeI, looked at you and I was like
we have to do it.
We can't hold.

Speaker 1 (32:55):
I could schedule you for a time even at 8 o'clock in
the morning, but he's like it'sRSV, like flu season right now.
Kids come in here tonight andget admitted even for a flu.
We're not going to have a roomand then I'm writing referrals
for you to get a test and thennow we're talking that it could
be a week.

Speaker 3 (33:10):
And I know how neurology is in his office
because I work for the Biddefordoffice and so I know for a fact
that I mean I understand thatchildren are different, but I
know for a fact that they arebooking six months to a year out
in Scarborough.
I know that because we havetheir patients call us our
office all the time.

(33:31):
So, like I am not interested inholding out on a referral, as
soon as he said referral for aneural, I'm like nope, not back
up, we're not doing that.
So I was like we're doing it,like if you can.
I was like if you can promiseme that she'll be hooked up by
tomorrow, no matter what, by 8am, if not today, then fine,
we'll do it, we'll do it.
And he was like, okay, thenwe're doing this like we're

(33:53):
gonna, we're gonna get upstairs,we're gonna get her all checked
in.
They may come um and and hookher up.
And by the end of theconversation he did come back
and say, unfortunately they'renot.
They do not have her on thelist.
There's just been too manypatients ahead of her.
Mind you, that EEG tech hadalready been over her shift by
like three hours and they werestill trying to get Paisley on

(34:18):
the list.
They were supposed to be out ofthere by noon.
That was like nine to noon isthe only time that they were
supposed to be out of there bynoon.
That was like nine to noon isthe only time that they were
there and we were gettingupstairs at three o'clock and
she was just leaving, like shehad not had the opportunity to
to hook Paisley up, but 7.45 thenext morning.

Speaker 1 (34:37):
She was in there.

Speaker 3 (34:39):
She was in there, yeah, so to get back to our
Saturday at the hospital.

Speaker 1 (34:43):
They bring us up to the Barbara Bush Children's Wing
and we get settled in there andit was just such an odd feeling
.

Speaker 3 (34:56):
Oh, I walked in and I started crying because the the
bed they have in there is soheartbreaking, because you
always see those pictures ofchildren who are so sick.

Speaker 1 (35:09):
Yeah, and they're in those, those chambers, and I was
like just knowing that we're onthat wing um was was difficult
and um thinking about thepossibilities of this maybe
becoming a regular in our livesand those things was all just
kind of weighing on me and Ikept trying to trying to push

(35:32):
that out and I also keptthinking about the children that
I think about on that wing andtelling myself that we don't
belong here.
You know, she's too healthy forthis.
We don't belong here.
I feel like we're takingsomething away from a child that
needs it, like I was goingthrough, like guilt and denial,
you know the whole time.
The last time I was on thatwing was many, many years ago.

(35:59):
My cousin, tammy and Howie,their little son, had been on
that wing and spent quite a bitof time there.
Shortly after birth they wantedto do something as a thank you.
We raised all these turkeypoints.
They used to call it back inthe day, shaw's used to.
You spend so much money.
You get points towards, likethanksgiving dinners, like all

(36:21):
this.
You know the whole fixings, thewhole nine.
So we ran this campaign to saveas many of those as possible to
feed the barber bush wing forthanksgiving and, um, it was
tammy's idea and and wecollected all these turkey
points and mom worked at shaw'sand we had so many turkey
dinners, you know, full turkeysand all the fixings and
everything.
And I remember going to thehospital, you know, in the

(36:45):
morning on Thanksgiving morning,you know, super early, and
rolling in there and setting uptables and and just putting out
this whole spread and going intochildren's rooms that, um, you
know couldn't come out to havedinner or to go talk to them and
I remember sitting down andplaying video games with a kid
on his bed and just my image ofthat place was I don't know man,

(37:10):
25 years old, right, and tothink about the heartache and
the things that those kids wentthrough and like it was hard.
It was hard to process thatwe're there.
You know what I mean, yeah.
And, um, one of the things that,um, I kept thinking about is
that my timeline has been fullof friends that they're they're

(37:33):
battling issues with theirchildren.
You know, you have, uh, we havelike family of family that's
going through it, you know, andfriends and acquaintances and
like I don't know, I don't knowhow to really put this out there
, but we've been extremelyprivate and quiet about this

(37:54):
situation.
We're sharing this on thepodcast because this is the deal
we made with this show.
This is the obligation we haveto the listeners and to our
daughter that we're always goingto share these things because
there's strength in this forsomebody right, absolutely.
And there's going to be somebodylistening that's going to go
through this or deal with this.

(38:14):
That's why we're doing this,but we haven't we've been
private about this.
You know, nobody really knowsabout this until this episode
comes out.
Um, part of the reason for thatin my justification in my mind,
was that, like I, I didn't wantto put it out there and and
wrongfully take attention andprayers away from somebody that

(38:37):
needed it I don't know if thatsounds funny to people.
You know what I mean.
But like to me, I was like if Iwere to post right now where we
are and what we're goingthrough without knowing anything
.
That's basically just liketaking attention.
Does that make sense?

Speaker 3 (38:54):
I also didn't want to post because I didn't want to
be flooded with a bunch of textmessages and Facebook posts and
stuff like that.
Like, my attention was on herthe entire time.

Speaker 1 (39:06):
I wholeheartedly just wanted to put all my energy
into her.

Speaker 3 (39:09):
And that place sucks the energy out of you like just
watching our little girl gothrough whatever she's dealing
with, the uncertainty of likewhat the outcome is, and you
know, having them come in andlike, poke and prod her, like
just I mentally did not have thecapacity to eat, I didn't have

(39:33):
the mental capacity to sleep, Ididn't have the mental capacity
to sleep.
I constantly would just stareat her and and wonder why, and
and just pray that everythingwas going to be okay and that
you know we're strong enough toto come out on top of this.
And I mean it's okay, like thatwe that we post and or not post

(39:56):
, but talk about it now and andpeople want to reach out because
we're home now.

Speaker 1 (39:59):
Yeah, it's different.
I think all of our energy hadto be given to her.
Like you said there was no.
It was weird to explain therewas no energy for anything else.

Speaker 3 (40:22):
Like so much so we left the tv on the same channel
for hours and it was like not,it wasn't even like cartoons,
like either one of us evenwanted to watch it I didn't, it
was just noise in the backgroundthat you know.
We're just like you're juststaring at these four walls,
that, and your and your daughterin in this crib, and you're
just like I.

Speaker 1 (40:39):
I don't even know what the right thing to do what
the right thing to say is, atthis point like, neither one of
like, neither one of us spentmuch time talking to one another
, like we just didn't know Ithink my mom was with us too,
and I think the three of usreally were just processing on
our own and, um, you know, otherthan like me and my mom walking

(41:00):
downstairs to get food for usor something like there was not,
I don't even know how to put itlike to your point like we just
weren't talking.
We weren't, we were all justprocessing and and trying to
figure it out.
Occasionally, one of us, youcould tell we'd all been
thinking about things for hours,cause, you know, a couple of
hours would pass by and then oneperson would open their mouth
about something.
You know what I mean and thenthat would, but it was, it was.

(41:20):
It was tough, I mean, when timecame to um bring my mom home and
do the chores for the night.
Like it was so incrediblydifficult to leave the hospital
you know, and um, like you kepttelling me like nothing's gonna
happen tonight, you can stayhome, and I was like you're
absolutely out of your mind ifyou think I'm not gonna be back
here.
Like, yeah, you know, as soonas you begin to pull away, it

(41:43):
just like it just starts to eatyou apart.
And, um, I did everything Icould to remain positive and
we're going to talk about that.
That that's really all that youcould really do.
And to continue your point onnot having the energy for
anything, like I came home and Isaid we could be here for a few
days.
We could be here until Tuesday,whatever you know, so, um, I

(42:06):
packed my computer for work, mynotebook, my, my calendar, uh,
some some journals, a Bible,like everything, to keep myself
busy and to keep myself focusedand, uh, none of those things
made it out of my bag.
I was so emotionally andphysically drained in that
hospital that it's mind-numbing,Like you don't move, you just

(42:29):
sit there and you don't move andthe next thing you know you're
just staring at a clock.
It's weird.
Unfortunately, when I wasdriving back, that's when they
came in and started trying to doblood draws and stuff.
And I know that wasn't good.
No.

Speaker 3 (42:43):
They had to do a standard blood panel.
They were checking metabolicpanels and a full CBC, so a
complete blood count, rightfullyso.
They had checked glucose, sowe're checking her sugars.
So they had to do a couple ofheel sticks and if you've never

(43:06):
seen a heel stick happen before,they basically take a needle
and prick your heel butunfortunately, like your veins,
when you prick the heel you haveto continuously squeeze the
heel to get drops of blood tocome out.
That's not an easy process fora baby.

(43:28):
It's not like they could put,you know, a tourniquet on and
get blood to, you know run tothat area on an ankle and a heel
stick.
That's not what they did.
So in my mind I'm looking atthis like I'm not sure why we're
doing this.
This seems a little bit wrongto me.

(43:51):
I could understand when theywere doing it when she was born
and they only needed a littlebit, but they needed For a
glucose test, not for an actualblood draw.
Correct, correct.
They needed two tubes of bloodand they were squeezing her heel
.
And squeezing her heel.
She was screaming at the top ofher lungs and it was this

(44:14):
scream that I have never heardin my life and I'll tell you
right now, I never want to hearit again in my life, I don't.
This little girl was hurtingand all I could do was just hold
her and tell her that I'm there, it's okay and I can hear it,

(44:37):
and it just hurts me becausethere was nothing that I could
do except for watch themcontinuously squeeze her heel to
get this blood.
And so the nurse the nightnurse had come in and, as she
was talking to me, kind of doing, doing her rounds, getting, um,
you know, the getting to knowus.

(45:00):
Um, really, she didn't justwant to be the nurse, she wanted
to know who we were and why wewere there.

Speaker 1 (45:05):
And yeah, lindsey was really nice she was super nice
I came in during theconversation yeah, portion of it
and then she unfortunately gota phone call that both of the
blood draws failed because theythey clotted which of course
they did.

Speaker 3 (45:20):
You're squeezing the ankle and you're getting blood
out and you're putting it into atube and you're tapping it,
which is allowing air to get toit.
So of course that blood isdoing what it's supposed to be
doing.
Unlike a standard stick,there's a tube that runs to the
collection tube and there'snowhere for air to get in there,
so it's not going to, it's notgoing to clot.

(45:40):
So why this wasn't the firstoption?
I will never know.
I will never, ever allow themto do a heel stick again.
Ever knowing, I'll just neverlet it happen again.

Speaker 1 (45:55):
They had to do it a third time.

Speaker 3 (45:57):
Lindsay was super nice and she was like let me try
, let me try to see if I can doit and get it not to happen.
Let's warm her heel for 10extra minutes, because if you do
warm up the heel you might beable to get it quicker and it's
not going to clot.
And unfortunately that thirdtime didn't work either.

(46:18):
So Lindsay said you know, wecan give her a break or we can
do a standard blood draw.
And I said let's just do it,let's just get it done and over
with.
She unfortunately has had thisdone three times, but let's just

(46:43):
get this done because I don'twant her to have to go through
this again.
I I don't want to prolong it.
Uh, my thought process is let'sjust get it done and over with
um.
She's already dealt with bloodwork three other times,
unfortunately, um, but I don'twant her to have to do it
tomorrow too yeah I would ratherjust get it done and over with.
So I give Paisley a bottle, theycall down to the lab and of

(47:05):
course Miss Thang falls asleepin my arms and they walked in
and Lindsay was like if she'ssleeping, we'll do this tomorrow
.
And I was like no, ma'am, let'sjust get it done and over with.
So I laid her on the bed andthe nurse.
I feel bad.
I feel bad.
The nurse came in and she waslike all right, so we're going

(47:27):
to do a heel stick.
Lindsay and I both looked ather and bit her head off.
I was like absolutely not.
Nope, not happening.
We've done it three times.
It failed, we're not doing it,we're not doing it.
So they tried to find a vein inher arm and unfortunately could
not.
But they did find one in thetop of her hand and it was quick
, it was.

(47:48):
You know, they got what theyneeded.
She actually got a little bitof extra just in case.
So, yeah, and that blood workcame back.
It came back.
Good, it was not, it did notclot or anything like that.
So that was done and over with.
Unfortunately, the poor girlhad to go through three heel

(48:08):
pricks.

Speaker 1 (48:09):
So Saturday um that night, we spent the night in the
hospital we stepped in areclining chair and I had the
little kid's bed in the windowand um tried to get sleep and
prepare for the the next morning.
Um you know, sleeping in ahospital is never fun, um you?

Speaker 3 (48:33):
know, and I think I woke up every 30 minutes.

Speaker 1 (48:36):
The thought of the inevitable is like the most
difficult thing.
And before we get to thetesting, I just this entire time
kept holding on to the factthat, like this is not possible,
this is not possible.
And when we started you rollthe clocks back to us having our

(48:57):
first conversations on Friday Ihad said that you know, for me,
one of the reasons why it tookme so long in life to decide to
have children was the fear ofthis.
Feared about having kids ishaving to deal with the

(49:20):
heartache and the heartbreak andand and dealing with um, you
know, trying to um be there foryour child and help through like
these things that are out ofyour control, right, like
disabilities and things that youjust can't control.
And that's one of the thingsthat scared me the most about
having children and um, for me,when we found out that we were
going to be parents right aftermy father passed, when we,

(49:42):
literally you were pregnant,when we were giving, like the
eulogy, all of those thingssignified to me that my dad is a
part of this and that he had ahand in picking who our little
daughter was going to be.
And I remember, if you go backto all these you know

(50:04):
conversations.
Before I was bound anddetermined that it was a little
boy, cause my dad always wantedto have a grandson and I thought
, that's, you know, he was goingto send me, um, the boy that I,
that I wanted.
And ultimately my dad sent methe little girl that I needed
and um, you know you can hear mehave those conversations on

(50:24):
previous episodes but, uh, heabsolutely did right and sent me
what um we needed.
And this whole time I've ledinto a positive mindset and the
faith that Paisley Rain arrivedhere when she did, because she
needed to save this family.
My father and the good Lordknew that the three of us

(50:48):
wouldn't pull through over hisloss without a miracle.
And she was our miracle, amiracle, and she was our miracle
.
And I was steadfast andconfident in the fact that
nothing could be wrong with ourmiracles, because the last thing
that would happen would be tosave us, to send us our miracle,

(51:12):
followed by great heartache andthat's all I kept clinging to
the whole time.
And, um, I tried to do my bestto not focus on what could be um
, because when I found myselfdoing that, you'd kind of very
quickly wind up in a dark hole,you know.

(51:34):
And um, like, my mom was askingme on the ride home on Saturday
when I was dropping her off,like are you okay, whatever?
And I just kept telling her I'mnot, I'm not thinking about it,
like I'm not trying to thinkabout it.
And, um, I told her exactlywhat I just told you and she
said, well, what if it goes theother way?
And I was like I honestly Idon't, I can't process that.

(51:57):
I said, but I'm probably goingto ride my train straight to
hell, because if this comes offthe tracks for me, I don't know
if I can hold on.
I don't know where I'm going togo or what I'm going to do or
how I'm going to respond if thisdoesn't come true.
I couldn't even think aboutwhat would happen.
So I couldn't, you know what Imean.

(52:20):
I just wouldn't do it.
But I, I just hung to my faiththat this was going to be okay.
This was going to be okay andthat you know, there's going to
be a reason for what we're doing.
Um, it's going to show us thetrue priorities in our life.
It's going to make all of usslow down and focus on what's
important and realize that allthe things that are going around
in our lives, that are spinningaround in our worlds, that are

(52:42):
bringing us down, that arecausing us stress, that are
causing us anxiety, that youknow is robbing us from sleep,
we're going to realize afterthis experience that none of
that shit matters.
If you have each other and youhave your health, that's it.
That shit matters.
If you have each other and youhave your health, that's it.
And I just kept telling myselfand praying and saying I get it.

(53:03):
I understand the lesson.
You're putting me here for areason, like I understand the
lesson.
Please don't use my child toteach a lesson anymore.
I get it.
She's what's important.
This is all that's important.
All the things that I can't fix, I can't afford, I can't remedy
, it doesn't matter to me.
This is all that's important.
All the things that I can't fix, I can't afford, I can't remedy
, it doesn't matter to me.
This is all that's important tome.
And when you spend a few daysin those four walls focusing on

(53:25):
your child and realizing this isall that ever-loving matters in
this world, when you're inthere and you're talking to
yourself and telling yourselfI'll give up everything else.
I have to make sure she's okay.
That's all that's important tome.
It really puts your life in awhole different perspective.

Speaker 3 (53:44):
You know, yeah for sure.
That's definitely all thethings that I've been thinking
about.
It was just, I need to focus onher, and I think it was
Saturday night.
You ended up going home andthat was hard for me because you

(54:11):
guys you and your mom werethere from when we got there on
Saturday morning until you left.
And as soon as you guys left, Ijust held her and cried because
I was like, why us, why now?
Um, and I just prayed and shejust, paisley, just sat there,

(54:36):
happy as can be, just playingand smiling at me and talking,
and I did the same thing.
I said whatever it takes,whatever it means to make sure
that my little girl is healthyand happy, I don't care, I'll

(55:01):
give it all up, but please justwatch over her.
I prayed to my mom, I prayed toyour dad and I said, please,
whoever, everyone, just watchover my little girl, just make
sure that she's okay.
Just having her there, just sohappy, helped me during those

(55:25):
times of just watching the clockand counting down the hours,
until I knew that they weregoing to come in and put her
machine on.

Speaker 1 (55:32):
It was just the ironic thing is that she was the
strongest one in the room.
And, uh, she was just so happyall the time.
And um, it puts a different, adifferent perspective on things.
When she's the one goingthrough it and she's just
smiling through it and, um, youknow, she clearly screamed her

(55:53):
way through it too Like when,when they came in on Sunday
morning and started gluing allthose things to her head and, uh
, you know she's losing it andwhen she will literally just
lock eyes with you and just lookthrough your soul, like, like,
why are you letting them do thisto me?
it's hurt like that, um, that'sis, uh, it's hard to process

(56:19):
Because you know, like I, likeshe knows, hey, my dad has the
ability to take me out of here.
You can remove me from thesituation while you're still
leaving me here.
You know you can't explain toan infant.
You know that, hey, man, wehave to do this.

Speaker 3 (56:31):
I can't tell you how many times I just held her and
said I'm sorry.

Speaker 1 (56:35):
I'm sorry.

Speaker 3 (56:38):
I love you and I'm sorry.

Speaker 1 (56:38):
I'm sorry, I love you and I'm sorry Seeing her with
all the wires glued to her head,with the fishnet on and the
tape all around her head andjust the train of wires to the
back of her head and the wirescome off her feet and everything
.

Speaker 3 (56:57):
You could watch her heartbeat and pulse on the
screen, and it was just too much.

Speaker 1 (57:01):
There's a computer screen with all these different
wavelengths on it.
They're measuring all differentareas of her brain and her body
movements.
They're looking at oxygen andheart rate and everything at the
same time.
So there's all these monitors,there's a camera that films all
of us at all times and as thetest is rolling on on Sunday,

(57:28):
we're looking at things and theyhave a button that every time
she would drop her head, you hitthe button to kind of log the
event.
And she had so many instanceswhere she dropped her head.
She's changed from dropping itrepeatedly, like five or six
times in a row, to dropping itonce or twice, but doing it a

(57:48):
lot more often, which ultimatelyus staying home on Friday was
helpful because she wasn't eventhe testing.
Waiting until Sunday washelpful because it just ramped
up testing.
Waiting until sunday washelpful because um she, it just
ramped up theactivity ramped up on sunday
yeah, because saturday we didn'tsee it much right, when you're
watching this computer screenand you're seeing every time she

(58:09):
does something, how does itreact?
When you're seeing it logthings on its own and you're
trying to like observe what'sgoing on next.
You know, like we talk about drgoogle I'm on google looking at
eeg maps for healthy brains ina six-month-old versus.
You know seizures and epilepsyand all these things and you're
trying to compare wavelengthsand you're going back and forth

(58:32):
and you're trying to get afreaking a google degree on
what's happening, because youneed some damn answers.
You know, and we're like well,if we, if we push the button,
this is how it logs it.
And then we're like okay, we'velogged 20 events here.
What happens if she drops herhead and we don't hit the button
?
Does this record it?
What's going on?
We're analyzing every singlething and, um, it was.

(58:55):
It was crazy because she justplayed through all of it.
Like she was just herself.
She didn't change herself somuch so that, um, like everybody
, all the nurses, every nursecame in to see her.

Speaker 3 (59:09):
Yeah, even if she wasn't there, her their patient,
like we heard multiple times.
I heard the cutest baby is inhere.
Like and they all just came into to see her.

Speaker 1 (59:19):
She would wave to them and um, smile and and um.

Speaker 3 (59:23):
I don't know about you, but before we started
monitoring um you, but before westarted monitoring um, we
actually had dr heist.
He did rounds.
We didn't touch on that um whenthe machine had gotten put on
her.
Yeah, um and uh.
I honestly, after thatconversation, had a glimpse of
hope that that maybe this wasn'tyeah the seizures, like, yeah,

(59:46):
I had a glimpse of hope and Iheld on that the entire time.
I said this is it, this is this, and and you hate to do that
because you want to be preparedfor the worst.

Speaker 1 (59:57):
Yeah, it's tough when you hang onto the glimmer of
hope.
I did that the whole time mydad was sick, you know, every
day I found a new layer of hopethat I could lean into and and
that just kind of ramped up thedisappointment.
But we needed, we needed a doseof hopium and yeah, um, the um,
the the test had just begun.
Yep, no events had happened shewas sleeping taking a little

(01:00:19):
nap and he came in to do anevaluation.
He was looking at the resultsand he said this is encouraging.
I'm actually yeah reallyencouraged of what I'm seeing
already he says I like this, Ilike this a lot yeah and that's
when he mentioned something elseto us yeah um, and you're the
medical person in the room, soyou can he um said that it's um.

Speaker 3 (01:00:37):
There's a possibility of benign myoclonus um epilep
uh it's over here.
I can't read it I know it'sbenign myoclonus of infants, I
think is what it's called YepBenign Myoclonus of Infancy.

(01:01:00):
So he dropped that on us.
I'm going to tell you right now, I didn't remember what he said
.
I actually asked the nightnurse or we had conversations
later on in the day about whathe had said, because all I heard
, like Charlie Brown, it may notbe.
It may be that I don't knowwhat he said.

(01:01:22):
I did not that name.

Speaker 1 (01:01:24):
All we knew was what he said was if it is that case,
then she'll outgrow it yeah andum so I grasped onto that as a
doctor, you don't usually, inthe middle of a test, throw
something that you know yourpatients and patients family is
going to cling on to, unless youthink there's a possibility of
it.
So there was something he sawin the results early now.

(01:01:46):
This is a sunday, he's you knowhe's on call Until 6 o'clock.
He's leaving for the day.

Speaker 3 (01:01:52):
We're not going to see him when the test is done.

Speaker 1 (01:01:55):
He even said at that time the discouraging part was
this is a 24-hour test.
I'm not taking it off untiltomorrow morning, and that's
only if we get a bunch of events.
If those events don't happen,then I'm going to keep you on
this until at least tuesdaywe're going to do at least 48
hours, and he also said I won'tbe here to read your tests on
monday or tuesday.
Another dr, will um, who was aprofessional.

(01:02:17):
That obviously she actually rana clinic in chicago and stuff.
So we knew we were in goodhands.
But you know, we were hopefulthat this wouldn't have to be an
all-day, 24-hour, 48-hourscenario.
So, like you said, we kind ofcling to that hope and, you know
, throughout the day we're justtalking ourselves in and out of

(01:02:38):
so many scenarios, but trying toremain as positive as possible
and explaining to everybody thatthis only happens when she's
tired.
It doesn't happen when she'slaying down.
A seizure could happen at anytime yeah, you can't plan if her
head starts dropping and youlay her down.
It's over.
It doesn't happen anymore.

Speaker 3 (01:02:56):
We don't see her tensing up um throwing her hands
, doing all the things that aseizure patient would would do.

Speaker 1 (01:03:05):
It's to the point of us, like I'm literally been
reading, like pupil dilation andinfants, you know, and I'm like
going through every singlething I possibly can, like what
do I need to be looking for?
You know, trying to get anykind of clue, um, which probably
wasn't the best thing, but Iwanted to at least be prepared
enough that, if it didn't go ourway, then I was more prepared

(01:03:29):
to ask questions.

Speaker 3 (01:03:30):
Right, you know what I'm saying yeah, and it was
getting to the point where welike continuously kept telling
like dr heist, uh, he had seenher do it, which was, which was
perfect.
He had seen her before we hadgotten brought upstairs.
Um, on saturday she was sittingthere because she was overtired
, because again doesn't want tobe left out.

(01:03:50):
Um, after being evaluated inthe er, she we're like she's
gonna do it.
Like we could pinpoint it, likewe're like give me five here.

Speaker 1 (01:03:59):
This is gonna happen.

Speaker 3 (01:04:00):
Give me five more minutes, I'm gonna sit her up
and she's gonna do it becauseshe's overtired and you don't
want her to do it right, but wecan.

Speaker 1 (01:04:07):
we can make her do it .
We knew that well.
I could tell you within 10minutes whether she was going to
do it.
She's going to do it, yeah.
Yeah, which is not a seizure.
You can't plan, you still canyeah.

Speaker 3 (01:04:15):
You can't plan when she's going to have, like when
someone's going to have aseizure.

Speaker 1 (01:04:24):
So I think she needs to be evaluated.

Speaker 3 (01:04:25):
Yeah, he said yeah, this is definitely what I'm, you
know.
I think this is infantilespasms and I want to have her
have the test.
So we're like not even halfwaythrough the test and she's like
down for the count, Like she'slike taking a nap.

(01:04:45):
I'm sitting in the reclinerchair and she's like watching.

Speaker 1 (01:04:48):
She'd nap with you for like two hours, right it was
two and a half hours.

Speaker 3 (01:04:53):
She was like we were hitting like an hour nap.
That was normal.
And I was like you know what,whatever, we're not doing
anything.
I literally sat there andwatched, like well, that was
five minutes, because the clockis right next to the tv.
I'm like trying to keep myselfoccupied on, I don't even know.
I think it's like chicago zooor something, and I'm like, okay
, well, this is cool and I'lllook, glance over.
And I was like, well, that was10 minutes.

(01:05:13):
Look back at the clock and I'mlike, god, almighty, like I want
to throw a towel over thatthing and just not even watch,
because I'm like I know we'rehere for 24 hours and we're like
it's two in the afternoon, likeit's.
This is just not going verywell.
And I tell you what I had beenwatching the clock and watching

(01:05:35):
the clock and sure as shit Ilook up at that goddamn TV and
there, mind you, we're watchinga zoo show.
Okay, chicago Zoo.
And what comes up?
What are they talking aboutnext?
A fucking bald eagle.
Yep, I'm done.
I'm done.
I just start crying.

(01:05:56):
I'm holding Paisley, looking ather with all these cords and
cables.
I'm like crying.
I'm like thanking Pops.
I'm like that's it, that's whatI needed, we're going to be
okay.
That's what he would always sayEverything's going to be okay,
we're going to be fine.
And I just let her sleep.
I said you know what, screw it.

(01:06:17):
They want her to sleep, theywant to see her sleeping, they
want to see her active.
And we've done all the things.
We've been playing, we've beenchilling, we've been eating,
we've done all the things.
I'm like we've logged it 20times.
I'm like we're going to haveall the data and then some.
There's not going to be anychance that we're going to have

(01:06:37):
to redo this test or not havethe information that they need.
And I was like fine, screw it,you want to sleep for two and a
half hours because we're in thehospital and what else can we do
?
Fine, I'll tell you what Iwanted to take a nap, so bad
during that time.
But I know that I'm on camera.

Speaker 1 (01:06:54):
Yeah.

Speaker 3 (01:06:54):
And they made a point to let me know that if they
caught us on like not doing safesleeping, if we were sleeping
with her in our arms and stuff,they would write us up.
Yeah, and after would write usup and after two they have to
report it because they'remandated reporters.
I had not slept friday intosaturday at all at all.

(01:07:14):
30 minutes here, 30 minutesthere.
I was so exhausted I barely hadeaten anything and I was like I
want to close my eyes.
So bad, but I'm not getting I'mnot getting written up it was.
It was bad.
So two and a half hours went by.
She woke up.
Another doctor came in who wason doing rounds, checked on her.

(01:07:35):
They thought she was great.
You know she looks good.
They came in to do vital signsand sometimes they just came in
just to say hi, they just wantedto see her.

Speaker 1 (01:07:44):
They repeatedly did that, yeah.

Speaker 3 (01:07:45):
Yeah.

Speaker 1 (01:07:46):
Right around this time we were kind of having
conversations where, like Ineeded to come home or somebody
needed to come home because wehad stuff that needed to be
taken care of, and then weneeded supplies so we can, like,
take showers and stuff, andwe're going to be stuck there
for at least one more night.
So we're making all those plans, at least one more night.

(01:08:08):
So we're making all those plans.
And you had said, you know, ifyou don't need to go, then, like
I need a break, like you had abreak yesterday, I need to get
myself out of here for a minute.
So the tables turned and thistime you took a break and you
left and I stayed with Paisleyand um.

(01:08:32):
Before um, right before you left, I was on my phone scrolling
around and um on Facebook, and Isaw, uh, a friend of mine,
somebody that's like a, anacquaintance, more so that I
sold motorcycles to him and hisfamily and he has a little boy
that has been dealing with a lotof medical difficulties and

(01:08:57):
challenges.
And I saw his post pop up on mytimeline and it was from the
same place we were in and thepost is basically him and his
family preparing to say goodbyeto their son, who's just over a

(01:09:20):
year old at this point.
No thank you.
And it's the same hallways thatI've walked.
It's the same benches I'vepassed.
It's the same hallways thatI've walked.

Speaker 3 (01:09:29):
It's the same benches I've passed.

Speaker 1 (01:09:29):
It's the same doors right they could be one door,
two doors, ten doors down fromus, you know.

Speaker 3 (01:09:35):
You had actually seen him when we were there to visit
your dad and I was there rightbefore my dad passed.

Speaker 1 (01:09:41):
His little boy had just been born and I remember
greeting him downstairs andtalking to him.

Speaker 3 (01:09:45):
Yeah, right in the lobby.

Speaker 1 (01:09:46):
And to think about all that, and then even for me
to be back in this hospital,walking these halls with my
mother after all the time wespent there with my father, that
was weighing on me heavily.
And just reliving all of thoseexperiences with him and all
those memories, and trying toseparate those things.

(01:10:11):
And like the process, all thatwas just really weighing on me.
But when I'm sitting there andI'm seeing these messages,
literally I just turn my phoneon and that's what's looking me
in the face is a friend dealingwith something to the one
millionth degree of what we'redealing with, something to the
one millionth degree of whatwe're dealing with.
And I just looked at that and Iprayed for him and for his

(01:10:33):
family and uh, immediately beginto just thank thank God for for
us and our situation and topray that we're going to,
everything's going to gonna beokay, but to be thankful for
what we have and where we are,you know, and, um, you almost

(01:10:55):
feel guilty for for having thosethoughts of like, why me, when
you know somebody else is goingthrough something so much
greater than what you are, youknow, but, um, you, you, you had
to come home and, um, I didwhat you did when I, when, when
I left, and I just, you know,bundled her up and and sat there

(01:11:18):
with her and uh, talk to herand apologize and prayed until
she slept, and then we just justsat there the whole time we
were gone.
You know, and I think you cantalk about how difficult it is
when you realize how difficultit is to actually pull away from

(01:11:38):
the hospital.
So you came home to run errandsand we just sat there and she
slept for another hour and ahalf or so and, uh, then she, we
had some nurses come in andcheck on her and start doing

(01:11:59):
some vitals and I kind of wokeher up.
So I set up like a little playarea for her and, uh, we were
playing and then I think threeor four nurses came in because
they were like we just heardthis beautiful baby on the
planet is in here hanging out,so we wanted to come in.
I began to get suspiciouswhether they were coming in and
saying wow, there's the cutestbaby with the honkiest of a dad

(01:12:22):
by himself in there.
You know what?

Speaker 3 (01:12:23):
I mean, don't let me catch a charge.

Speaker 1 (01:12:24):
Wow, you know, I'm sure dad had something to do
with it.
A charge, wow, you know suredad had something to do with it.
But uh, his nurse just keptcoming in to check on her and,
um, you know, we're gettingprepared for another night in
the hospital.
Then you're gonna pick upchipotle and you've got your
home doing chores and packingclothes.

Speaker 3 (01:12:47):
Yeah, but before we even got there.
That was like walking out to theparking garage was like very
hard, like it was likeheartbreaking, like I was like I
shouldn't be leaving.
How do I leave my babyuncertain?
Because the only time that I'veactually left her is gone to
work, and I knew that she wasfine.

(01:13:08):
I knew that she was fine, Iknew that she was healthy, happy
with you guys, she's fine.
So for me to walk away from herwith the uncertainty, I was
crushed.
I got in my car, turned my caron and we have a camera that
faces her car seat and it wasempty and I just cried, like

(01:13:28):
that just empty feeling in your,in your heart, like that
feeling of, like a ball in yourthroat just overcame me and I
just sat there in the parkinggarage for at least 10 minutes
before I could know clear myeyes enough to actually see
where I was going.

(01:13:49):
Um, so yeah, then I, you know,got the courage to to drive home
and when I got home, I racedaround as quickly as I could to
to get gas and pack up the um,all the stuff that we needed and
do the barn chores, take careof the animals and do all those
things, um, to get out of hereand get back to you as quickly

(01:14:11):
as I can, yeah, um, and so youknow I do all those things.
And I was like, all right, youknow how's everything going
there, like I'm checking in withyou and you're like, well,
she's still sleeping, we're good, we're, we're okay, like she's
doing great.
Um, I'm like panicking, likeI'm like, oh, my god, she's
probably gonna have a big like abig situation happen, like
while I'm not there and I'm notthere to like help.

(01:14:32):
And so I'm like freaking out.
And so I was like, well, I'm onmy way back, I'm just finishing
up the chores.
I'm running upstairs Like damnpig is choking again, but I
don't really care, like I'mwhat's going on.

(01:14:52):
I'm there and she helps me dosome things.
And then I hit the road and I'm, you know, at the, at the gas
station.
I'm like watching the gas, likeI'm like let's go, like I need
to get out of here, like you'retaking all day.
So I I did get my gas and I getmy car and I'm like trying to
like queue up the directions tomake sure that I like get there,
because my mind is just mush atthis point.

Speaker 1 (01:15:16):
So that point.
I've driven to that hospitalhundreds of times and when I was
returning on Saturday night Imissed a turn and ended up in
the ghetto.

Speaker 3 (01:15:27):
Yeah.

Speaker 1 (01:15:29):
And to your point, like your mind's just not in the
right place, like I'm just like.
So I totally understand whatyou're saying.

Speaker 3 (01:15:32):
Yeah, I'm like I don't even I know how to get
there, but I don't know how toget there right now at this
moment.
So I'm doing that and all of asudden my phone, like my dash,
lights up and it's likesomeone's calling me and I'm
like oh my God, oh my God, likeI'm shaking trying to answer it
because I can see that it's aScarborough number.
So I'm like, oh my God, whathappened?
Like you can't get to yourphone, like I immediately
anxiety straight down a rabbithole.

(01:15:53):
I'm like you can't get to yourphone and something happened, an
emergency, like what's going on?
And I was like I answer it andI was like hello, like you.
And he's like on the other lineand he's like hi, is this Allie?
And I was like yeah, and he'slike this is Dr Heiss.

(01:16:13):
And I was like why do you soundso happy?
Like I'm not saying that, butI'm like what's going on?
He was like I have great newsand I was like don't lie to me,
don't lie to me.
I like literally said it twiceand he was like nope, he's like
I, I have some wonderful newsand, uh, you can go home yeah
and I said are you kidding meright now?
and I just started crying.
I was like you're lying.

(01:16:34):
No, this is you're, you'reserious, you're serious, we can
go home.
And he says, yep, um, I'm gonnasend them up, I'm gonna send up
my team right now and we'regonna unplug her.
And, uh, it's not seizures,you're, she's gonna outgrow this
.
This is the, in fact, what hecalled it, the benign myoclonus
of infancy, and there's no rhymeor reason as to why it happens.

(01:16:56):
Babies are weird.
They have it.
It comes, it goes.
It will get worse before itgets any better.
He said but they're coming toyour, coming to your room right
now.
Are you at the hospital?
And I said I'm not, but myhusband is, um, he's like I'll
call him.
And I was like no, no, let mecall him.
And he was like you're driving,I want you to get there safely,

(01:17:17):
let me call him.
And I was like no, I'll callhim, like I was just so excited
that I had to get you on thephone and tell you that we are
going home.
Like we still had eight hoursto go on this at least, because
it is probably seven o'clock now.

Speaker 1 (01:17:32):
We had another 12 hours.
I think Something yeah.

Speaker 3 (01:17:35):
Like we still had time on the clock.
I'm looking at the dischargepaper right now and it said that
we did 10 hours, 10.75 hours onthat machine yeah, 10.75 hours
on that machine.
And he had enough informationto rule out any sort of epilepsy
across the board.

Speaker 1 (01:17:54):
Basically what we did with her the fact that you gave
her a two and a half hour nap.
I gave her an hour and a halfnap.
That mimicked a night's sleep.
Yep, all the activities we'dlogged.
He was basically like you'vegiven me 24 hours of data in 10
hours.
Yep, all the activities we'dlogged.
He was basically like you'vegiven me 24 hours of data in 10
hours, yep.
When you called and I answeredthe phone, I just figured you

(01:18:17):
wanted an update, you know.
But I could hear in your voicelike you were like crying when
you were talking to me, so Ididn't know what was going on.

Speaker 3 (01:18:30):
I remember I said we're going home.

Speaker 1 (01:18:30):
You kept saying going home, I I didn't.
I didn't know if, but like theway you were crying at first, I
didn't know if, like, like,we're going, she has seizures.
We're going home like or orlike yeah or she?
doesn't you know like and uh Ididn't know how to even like put
the words out when it's onlyeverything was okay, like I just
I just I mean, I'm looking ather, you know, and she like

(01:19:00):
looks right into my eyes and Ijust started bawling.
I told her we're going home,you're okay, and I'm holding her
.
I told her we're going home,you're okay and I'm holding her.
And minutes after getting offthe phone with you, the door
blew open and it was our nightnurse.
Did you hear the news You'regetting out of here?

Speaker 3 (01:19:17):
Yep.

Speaker 1 (01:19:18):
And they moved so quick that before I would say 20
minutes to a half an hourbefore you made it to the
hospital I had all of her stuffwas disassembled, the doctors or
whatever the nurses came intook everything off of her,
cleaned her head, gave me thedischarge paperwork and we

(01:19:40):
packed up most of the roombefore you, you know 20 minutes
or so before you could even makeit there.
That's how they were motivatedto get us out of there.
She did not like the stuffcoming off all the glue and
adhesive all over.
It was so bad and she was havingsuch a reaction to it that I
basically stripped down to myskivvies and jumped in the
shower with her so we could washthe stuff off of her.
But they were so motivated toget us out of there, to get us

(01:20:05):
home.

Speaker 3 (01:20:07):
They were sad to see her go because she was so happy
and they loved her so much, butthey were.

Speaker 1 (01:20:12):
We had the conversation, that the amount of
stuff that they have to dealwith, the heartache and
heartbreak that they have todeal with to have um six month
old, happy little girl yeahgreeting them at all times,
always smiling um, with apositive, showing them her new
trick of waving high.
Yeah but with a positiveprognosis at the same time.

(01:20:33):
Like I think they just wantedto be around her, it was
positive energy, you know um,another thing that's kind of
crazy about this whole scenariois, during the mix of all of
this, like everything that'shappened, is my little girl

(01:21:01):
called me dad, mm-hmm.

Speaker 3 (01:21:06):
Yeah, first words dad .
Yeah, first words dad.
So much so that the eeg techsaid did she just say dad?
And I looked at you and I saidyep, she sure did.

Speaker 1 (01:21:22):
She hasn't said mom or anything, nothing this has
been, uh, I don't even know howto.
I don't even know how to sumthis up, man, I really don't
like.
Some of it seems like a dream,you know what I mean.
Some of it seems like anightmare, like, uh, the

(01:21:43):
whirlwind of emotion that wewent through, the fact it all
started with my little girlplaying and her head falling, to
all of this, you know, to a fewdays later, the phone call like
we're okay, we can go home.
Like I don't even know how toreally truly sum up what we just

(01:22:06):
went through.

Speaker 3 (01:22:09):
I don't.

Speaker 1 (01:22:10):
Yeah, I don't have it either you go into a weekend
with like your list of thingsright, like you have a couple
days off and I look at weekendsas time for me to work you know
what?
I mean so like we're allwriting things up and think
about what we're going to do,when we were so far away from
anything we thought possible ofdoing yeah we could never have

(01:22:33):
imagined our weekend going theway that it did.
you know you never want to dreamup the frightening experience
that we had, but you are sothankful for the positive news
that we received.
It's wild, I don't know how toexplain it.
I really don't.

Speaker 3 (01:22:52):
All I can do is thank my lucky stars and everyone
upstairs who's watching over us,and just continue to pray that
they watch over us during thisjourney of life with her.

Speaker 1 (01:23:02):
I mean, we came out of this on the way home saying
that if there's one thing thatwe need to do after this weekend
is to lean so much more intoour faith because that's the
only thing that pulled usthrough to continue to train our
brains to remain positive, butto lean into our faith because

(01:23:24):
that's ultimately all we had,and there's a lot of lessons
learned over the weekend onpriorities and on, you know,
spirituality and positivity, andI don't know.
I don't know how long it'sgoing to take for me to truly

(01:23:44):
process what we went through,like we.
I'm so, I'm so grateful andthankful that this was a a
three-day experience, not athree-month, not a three-year,
not a 30-year experience youknow what I mean so many
families go through this stufflong term like I was worried I
was signing up for like the typeof uh, long drawn-on experience

(01:24:06):
we had with my dad.
The fact that we had to gothrough it was difficult, but
the fact that we made it throughit as quickly as we did was
such a blessing.

Speaker 3 (01:24:18):
I mean, we do still have a little bit of a road
ahead of us when it comes to herovercoming this.
We do have things that we haveto put into play we need to take
away, like specific hard toyswhen she's getting tired,
because she is still going todrop her head.
And she could certainly hurtherself with what she's doing,
you know, so it takes a lot ofattention, you know.

(01:24:41):
but we do have follow ups, withthe neurologist coming up in the
next couple of weeks, andthey're going to monitor her and
kind of watch this process justto ensure that it doesn't turn
into anything else.
So they are going to monitorthat.
But it's going to be the sameprovider that saw us through
this entire process and the onethat gave us the good news, and

(01:25:03):
so that makes us feel good thatwe're going to be able to circle
back with him.
He, he has the data, he haseverything that he needs, um,
and he has no doubt in his mindthat she's going to outgrow this
and and we're going to be okay.
So, um, you know, there is alittle bit of a road ahead of us
that we're going to have to, um, you know, still monitor and

(01:25:23):
and be cautious of um, but toknow the outcome was yeah, this
was as positive as a result aswe could have hoped for.

Speaker 1 (01:25:33):
Yeah, um, you know the initial pediatrician was
wrong and saying it was adevelopmental yeah you know
thing, it actually is acondition yeah we're so grateful
that it wasn't the spasms thatlead to these seizures.
Um, we're so grateful that wewasn't the spasms that lead to
these seizures.

Speaker 3 (01:25:49):
We're so grateful that we went and had it done.
You know what I mean, becauseit did get worse.

Speaker 1 (01:25:55):
Like time she's done it, the frequency in which it
happens.
We would have been scared andwe would have been starting this
process and waiting onappointments and things Looking
to get in.
You always say that when yousprinkle time and distance on it
, you know things make sense andand you know it happens for a
reason.
So we did what we had to dowhen we had to do it.
It went the way it had to go,and we're thankful to now know

(01:26:17):
that our baby girl is going tobe okay.
Yeah, and um.
Chalk it up to um aconfirmation of faith and a
lesson in priorities, and and umto truly be thankful for our
blessings and what we truly have.
You know, I think it reallymakes you not take health for

(01:26:38):
granted.

Speaker 3 (01:26:39):
I think it's also reallyimportant to remind the moms out
there and dads.
I don't know how the dadintuition works, but I did not
feel well on Friday at all atall and just I have migraines.

(01:26:59):
But to think about it, I didnot.
This was not a migraine.
I felt different, I felt odd, Ifelt off, so much so that I
left work early.
I do not call out, I do notleave work early unless it's
planned Like it's on theschedule already.
I went to my boss and I waslike I feel sick to my stomach,
I have to go home, and it waslike within 15, 20 minutes of me

(01:27:27):
being home early that I hadseen the episode.
Would I have not and not caughtit on camera Right?
Would we be frantically lookingnow?

Speaker 1 (01:27:31):
Well, we also know that messages never would have
made it to a pediatricianCorrect.

Speaker 2 (01:27:40):
You know what I mean we never would have had their
input.
Who knows how things would havewent so?

Speaker 1 (01:27:42):
clearly, we were put in a position to see these
things when we did to identifythem and to make the course of
action that we did to identifythem, um, and you know, and and
to make the course of actionthat we did so so just trust
your gut when it comes to yourchildren and if you are
uncertain, take a video, likeyou know, send it in to your
pediatrician I know they wereall thankful everybody we ran

(01:28:04):
into during this process that wehad a video.
So they're like can I see thevideo?
Can I see?
The video even the nurses likeeverybody, can I see the?

Speaker 3 (01:28:10):
video.
Can I see it?
I'm like, yeah, absolutely,here you go.
And it gave them a fullperspective of what they're
watching for on the floor aswell.

Speaker 1 (01:28:19):
We were handled with such class.
We had received the top-notchbest attention.
You what?
I mean, we were, we were takencare of, they were, everybody
was very professional and umthey were actually surprised how
like self-sufficient we were.

Speaker 3 (01:28:36):
They were like you guys can go downstairs, we'll
watch.
Nope, I'm not leaving her likedo you need anything?
Nope, we're good.

Speaker 1 (01:28:43):
Nothing, nope, we're good, I know there's um, before
we wrap this up, before I forget, I know there's a lot of people
that are listening right nowthat are going to be like
they're going to reach out andsay dude, why did you guys not
reach out to us?
You didn't reach out to anybody.
Why did you, you know, not askfor help?
Why did?
I could have done the choresfor you.
The honest truth is that wedon't know.

(01:29:06):
You know what I mean, like my,my, um, all my mental capacity,
all my every ounce of energy andbeing, and who I was, was
dedicated to my little girl andI couldn't really process
anything else I'm honest, Icouldn't.

Speaker 3 (01:29:17):
I have missed text messages in my phone that like
sorry if I didn't get to you.
I just I'm supposed to beplanning a baby shower.
I just I mentally could not doanything.
I'm supposed to be working anddoing, making flyers and stuff.
I just I don't have it in me.
I have no mental capacity to doanything else except for stare
at my daughter.
I didn't even have the mentalcapacity to talk to you.

Speaker 1 (01:29:39):
Let's be honest.
Yeah, and you're talking aboutme.
You're looking at me Right?
Not?
I want people listening.
We're not talking about yousaying we didn't have like.
She's talking about me.

Speaker 3 (01:29:48):
Yeah, I'm staring at you in the eyes.

Speaker 1 (01:29:50):
Not speaking.

Speaker 3 (01:29:51):
Yeah.

Speaker 1 (01:29:52):
Um, so I apologize, I just.
There was no ability to reallyreach out, there was no energy.
Um.

Speaker 3 (01:30:00):
I also think that it's.
It's important for you'vetalked about it on your podcast
before that in times of need,sometimes you have to go to the
core, your core, and me, you andyour mom are the core, so like
and now paisley being there,like we clung to each other and

(01:30:20):
that was it we didn't have theability to even think about
anyone outside of our core.

Speaker 1 (01:30:27):
It was every ounce of energy and, being that, we had
to keep the like the four of usum on the up and up you know
what I mean.
So.
I apologize to those of youthat are listening that we
didn't reach out to you, causethat's basically all of you that
are listening that know us.

Speaker 3 (01:30:45):
Um, you know it just nothing against you guys,
nothing against anybody, man, itwas.

Speaker 1 (01:30:50):
Um, I didn't.
I would have not had the properenergy to actually give you a
proper description of what wasgoing on.
You know what I mean, yeah likeif I told you, hey, we're in
the hospital, like I would, Icouldn't have even fed you, yeah
, the information for you tounderstand and it probably you
would have been like who is thisguy talking?

Speaker 3 (01:31:08):
or or it probably you would have been like who is
this guy talking, or or memyself, cause it would have been
like that are listening that wehad conversations.

Speaker 1 (01:31:13):
Um, you reached out to me for something and I
expressed to you this is whereI'm at, this is what I'm doing,
because I knew I also couldn'tget in a conversation with you
and like and and be myself.

Speaker 3 (01:31:26):
Yeah.

Speaker 1 (01:31:31):
You like and and be myself.
Yeah, you know what?

Speaker 3 (01:31:32):
I mean I couldn't respond and be who I you
expected me to be or give youanswers you needed.
So, um, katarina in particular,like I was like one word
answers to her, because I'm justlike I can't, like I I'm like
answering like on my watch andI'm like, okay, yep, in the
morning, like just very I I hadmissed a phone call from brian.

Speaker 1 (01:31:49):
Um, and hours had gone by before I realized.
It might have been eight hoursbefore I realized and I'm like
should I?
I mean, brian just put his lifeon hold to travel to florida
with me.
I owe him a message and itturned into what was going on
and and you know, and, and it'slike it's hard to put out there
to people.

(01:32:09):
I had Matt Perkins had asked mea question and I was like this
is what I'm dealing with, youknow, and Finnegan as well.
Those are the only people Italk to.
I still, as we're having thisrecording, haven't reached out
to anybody because, like I'mstill trying to define the words
and the energy to put it alltogether, yeah it was much

(01:32:29):
easier for us to press recordand tell our story.
So I know a lot of people aregoing to hear the opening credit
to this and be like what thefuck are you talking about?
Yeah but this is this is it.
I think that we learned alesson on, you know, banding
together and giving all you haveto what's important, and that's
our little girl.
Yeah, and that's what we had,and that's about an hour and 30

(01:32:55):
minutes of us telling our story.

Speaker 3 (01:32:57):
Sorry, Kevin, if you were on cardio.

Speaker 1 (01:32:59):
Yeah, your legs are on fire if that's the case.
So all y'all that are listening,thank you for listening.
Thank you for your support.
I know you would have beenthere.
I know you would have prayedfor listening.
Thank you for your support.
I know you would have beenthere.
I know you would have prayedfor us.
I know you would have pulledfor us.
I know you would have offeredto do many things for us.
Just know us.
Knowing you would have donethose things meant the world to
us and they continue to and theywill always mean the world to

(01:33:20):
us.
We apologize for not reachingout to you.
We truly, truly, were justgiving every ounce of who we are
and our being to our littlegirl and that's all we could do,
and we didn't know how toproceed or to function or to
process these things.
But now we do and that's whywe're sharing them with you.
We want to say thank you and welove you and we thank you for

(01:33:43):
supporting Little American Dream.

Speaker 3 (01:33:48):
Now go wash your fucking hands, you filthy
germ-bot.

Speaker 1 (01:33:54):
Germ-bot Savage.
That's it and that's all BiggieSmalls.
If you're a loud, proudAmerican and you find yourself

(01:34:17):
just wanting more, find me onYouTube and Facebook at Loud,
proud American Put the face page, as my mama calls it.
If you're a fan of the GrahamCracker, you want to find me on
Instagram.
Or all the kids bytickety-talking on the TikTok.
You can find me on both ofthose at loud, underscore, proud

(01:34:38):
, underscore American.
A big old thank you to the boysfrom the Gut Truckers for the
background beats and the themesong to this year's podcast.
If you are enjoying what you'rehearing, you can track down the

(01:34:59):
Gut Truckers on Facebook.
Just search Gut Truckers.
Give them, motherfuckers, alike too.
I make it bleed.
I hate to.

(01:35:25):
I truly thank you forsupporting my American dream.
Now go wash your fucking hands,you filthy savage.

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Benign Myoclonus Of Infancy 246

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